Night out

We went next door for a night out last night. It was Chris and Jodie’s birthday party, although their actual birthday isn’t for a few days. It’s been the first time I’ve actually been out and had a drink, yes wine, for several months, at least since I started the second lot of chemo. I don’t drink at all while I’m having treatment, so I thought I would take advantage of the few weeks off that I have had.

We had a lovely time, although I didn’t have the energy to carry on till very late in the morning as we used to singing on the Xbox. I only managed till about 12am and then my body said it was time for bed. They had two lovely cakes made for them. One of a mans Chester and one of a woman’s chest. I preferred the woman cake for some reason. The cake was the nicest sponge cake I have ever tasted and Charito agrees with me. It was so nice that I managed to scrounge a large chunk of it this morning of Jodie and I’m in fact eating it in the middle of writing this. mmm yummy.

This work is licensed under a Creative Commons Attribution By license.

Hospital update

I had an appointment today at 3:30pm normally my appointments are in the morning, but because this one was just for a discussion with Dr Lee to find out what I was going to do in the interim period while I wait for my Stem Cell Transplant, there was no need to have bloods taken and wait for results etc.

However there was a surprise when I got there, not one of those good surprises like surprise you have won £1000 but a surprise that I was going to have my Pentamidine nebuliser (Septrin). I wasn’t expecting to have that today, although I was due for it. So the first thing I had to do at the hospital was spend 20 minutes in a room on my own while had used the nebuliser.

I went straight in to see Dr Lee after I came out. I was waiting to find out what the process was going to be. He told me had discussed it with his colleagues in Liverpool and rather than going through the process of putting on the expensive lanalidomide (Revlamid) and have to try and convince those who hold the purse strings that it would be worth it, they would carry on with the Velcade. They agreed though because of the pain I had been suffering because of the Velcade, they would reduce the amount they would give me.

The schedule at the moment is that I will have Velcade every week for four weeks. If I still need to have any more Velcade then I will do another four weeks after a week or two break. Hopefully though I should only need the four weeks as I will be in September then and should be having my SCT although I don’t know yet if it is at the beginning or the end of the September. I will know more on the date (I hope) after my appointment mid August.

This work is licensed under a Creative Commons Attribution By license.

Amy and Neils Wedding

Amy and Neils Wedding, originally uploaded by Sean Tiernan.

Amy B & W #togs #photography #flickr

behind the mask

behind the mask, originally uploaded by Sean Tiernan.

I thought I posted this last week, but must have forgot to do it ... chemo brain

My Princess is Married

We had a lovely time at my daughters wedding on Friday everything went really well and enjoyed the ceremony at Inglewood Manner.

Here are a few of the photos:

Amy and Neils Wedding VIEW SLIDE SHOW DOWNLOAD ALL

This work is licensed under a Creative Commons Attribution By license.

Despair

Despair, originally uploaded by Sean Tiernan.

A series of Images I'm going to try and create.

Apparently I’m not Normal

I know what some of you are thinking, that you have known I wasn’t normal for quite a long time!

I’m actually talking about my Myeloma! I’ve been to the hospital today, I had an appointment with Dr Lee. As I’m not having my Stem Cell Transplant until September and I’ve had 6 Cycles of the PAD regime, we needed to discuss what was going to happen in the meantime. My paraprotein has plateaued at 11, so having further PAD cycle would not improve my situation in fact Dr Lee is concerned that it could in fact make it worse as each PAD cycle I have weakens the heart and will increase the pain I have been suffering in my legs caused by the Neuropathy. So what would be the benefit, well it would keep the paraprotein level at 11, but the cost of it could be seriously detrimental. Another alternative would be to do nothing, but we don’t know if the paraprotein level would increase, which would make the last six months pointless or if it would actually stay at 11. With the way my Myeloma has been very aggressive, it is unlikely to stay at 11, so we cancelled that idea out.

Dr Lee explained that my case is very unusual and not normal at all. To be my age and the first transplant I had to have had no effect at all and now to have a period of waiting before the next transplant is the usual case scenario. So he wants to discuss it further with his colleagues before making a decision as to what to do, so another appointment has been made for next week.

However; there is one idea he has that he is going to discuss with them, and that is to put me on Lenalidomide(Revlimid) in the short term. Lenalidomide is normally used after the transplant and normally when the paraprotein has started to come back again. The idea is that it will keep the paraprotein low, maybe even reduce it more and it is way of knowing if it will be an affective treatment for me in the future. There is only one problem with this and that is that Dr Lee will have to authorisation from the people who look after the purse strings, as it is very expensive. The cost is about £52,000 per person per year. Which when you work it out isn’t that bad .. I only need it at the moment for 8 weeks (£8,000) so Dr Lee, if agreed by his colleagues is going to explain to them the reason why he wants to use it and why it is such an unusual case.

I hope they say yes, as there aren’t any alternatives at the moment and I would like to think that the treatment I am having is the best and not governed by some financial decision that may put my life at risk or at the least the long term success of my transplant.

This work is licensed under a Creative Commons Attribution By license.

Regular Google+ Hangout

I’m thinking about setting up a regular Google+ hangout. If you don’t know what that is, let me enlighten you.

A hangout is a facility on the new Google Social Networking site called Google+. The hangout provides the ability to link up with your friends or whoever you invite or if you wish you can create a public hangout where anyone can join in. Each person uses there web cam and microphone to chat to each other. The same as if you met up at a regular meeting. Each person can speak and see each other, just like a real meeting.

I thought it might be a good idea for those that have cancer to or would just like to join in a general chat to meet up. We could set it at a regular time each month, one that is convenient for those that are over the water as well.

If you want to get involved then and you have a Google+ account then add me, my profile link is https://plus.google.com/116501775048476006074

If you don’t have a Google+ and would like one, then send me an email at sctiernan@gmail.com or leave your email address in the comments and I will email you an invite.

This work is licensed under a Creative Commons Attribution By license.

Feeling Creative

I was feeling a bit creative with my mobile phone using a new app I downloaded – Camera 360

Vlog 3 Changing the dressing on my hickman line

 

This work is licensed under a Creative Commons Attribution By license.

The pain was too much

Today I tried going longer than usual without any pain killers.

I woke up early, about 5:30 in pain with my shingles, so I decided to take my usual two paracetamol and tramadol. I takes these normally every four hours so I was due to take more at 9:30. I managed to 11am which was very good. Normally I would take my first lot of tablets at about 8:30.

On a usual day I normally manage to get some sleep during the day as I’m just too tired to go through the whole day without some kind of rest. Today though we have been busy tidying up around the house and I never managed to get some sleep, even though I’ve been tired. So where I would normally manage to sleep through an hour or two of pain, this time I think I just made it worse. I tried to go till 6pm without any tablets. My plan was to then take another one at 10pm which would hopefully last me the night until I wake up again in pain. I can only take 8 tablets a day without it being classed as an overdose.

I managed to get to 5pm but I was in far too much pain to last another hour. So hopefully I can last as long as possible before taking the next lot, otherwise I will wake up in the night again and not get a good nights rest.

I tend to wake up in the night a couple of times with my feet aching at the moment more than I do the Shingle pain. I keep hoping that it is getting better even a little bit, I’m not convinced that it is though. I might have to revert back to the old pain killers that I used to use before I had myeloma. Now should I put a bottle of wine in the fridge for tomorrow

This work is licensed under a Creative Commons Attribution By license.

Google+ Add me or join me

I’ve started using Google+. If you have never heard of it, its another social networking site. It is still in it’s infancy although millions of users already. You can share or as much information you like within your circle of friends or acquaintances etc.

If you already have a Google+ account then please add me.

https://plus.google.com/116501775048476006074

If you don’t have one and would like to, then send me an email at sctiernan@gmail.com or leave a comment on this post, but you will need to let me know your email address.

I personally find it much better than facebook in the way I can share the information with only certain groups of people. Let me know what you think if you start using it.

This work is licensed under a Creative Commons Attribution By license.

Cancer Support Network by David Haas

The following article was written by David Haas who contacted me asking if he could be a guessed writer for my blog.

Sharing your experiences with others who have endured the burdens of fighting and surviving cancer — the same worries, fears and physical pain — helps so much while returning to normal.

It's not the same after cancer. No matter how much you want things to return to the way they once were, the past never returns exactly as it was. Finding that new normal is a slow adjustment period, and support networks help survivors acclimate to their new life.
For people still in treatment, support networks prove that there is a light at the end of the tunnel. Treatments end, hair grows back and energy returns.

Support groups offer people the opportunity to meet with other survivors, support those still undergoing treatment and learn about the latest research advances in fighting cancer. Sometimes, groups feature guest lecturers, short educational films or specific topics of discussion. Other times, people just gather and talk.

There are groups for almost any kind of cancer where you can share your experiences with people who are going through or went through the same thing as you. There are not only groups for breast cancer and melanoma survivors, but there are even groups for rare cancers such as mesothelioma and rare bone cancers. It's important to hear that other people are feeling the same emotions as you and experiencing the same physical difficulties.

It's best to attend a professionally facilitated support group, since discussions during ones that aren't led by professionals can become unhelpful. People sometimes are misinformed about survival rates, life expectancy and other important information. Without a professional facilitator, this misinformation goes uncorrected and people sometimes leave more worried than when they arrived.

Plus, if someone starts to cry, a professional facilitator can help that person work through her feelings. In the process, everyone learns.
To get the most out of your group, collect phone numbers for a few people. Start your own network of survivors. It's even better if they are also mesothelioma survivors because they'll understand more. Those people will become your rocks if you're having a rough day and need to talk.

Attending a support group can enhance a cancer survivor's quality of life, although it does not extend mesothelioma life expectancy, according to the American Cancer Society. As you move on and heal, you may not need to attend the group as much as you used to. But sometimes, it's nice to return. The newly diagnosed need to see that they can fight mesothelioma and once again lead a good life.

American Cancer Society; Support Groups
http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/MindBodyandSpirit/support-groups-cam

By: David Haas

This work is licensed under a Creative Commons Attribution By license.

Blood counts

I had an appointment today at Chester hospital, it was just for a blood test to make sure everything was going ok.

My Haemoglobin was 8.4 which is just on the border line of needing a blood transfusion. I didn’t have one, as I feel OK, well tired, but not that tired to feel the need for blood.

Platelets are still doing ok at 89 although lower than last time. Neutrophils are still a problem being only 1.3, but it is normally low at the end of the three week cycle. Hopefully they will start to climb back up again as this would normally be the week off if I was starting a cycle 7.

We are waiting to see how things this week go and then deciding on what we will do in the interim while I wait until September for my transplant. Dr Lee might put me on something else, rather than the velcade as it it causing so much pain in my legs each time I have it causing Neuropathy. I will be discussing it with him next Wednesday, which is when I have my next appointment with him.

At the moment though it looks like I’m on the right tracks.

---

This work is licensed under a Creative Commons Attribution By license.

Share the love

Many thanks to Kim for the article on sharing the love which mentions me and couple of others who are going through SCT.

You can read the full cure talk article at http://trialx.com/curetalk/2011/07/share-the-love/

your thoughts and best wishes are very much appreciated.

My Life With Myeloma Vlog 2

Make Myeloma History

Myeloma UK - A Film about Fundraising from Vanilla. on Vimeo.

Allogeneic Transplant Liverpool

I went for my first appointment back at the Royal Liverpool Hospital today, to find out more about my next transplant.

For those of you that are reading this for the first time, I have already had an autologous (own stem cells) transplant last August, but it didn’t work and my myeloma came back immediately and aggressively. I been on a PAD regime of which I have had a 6 three week cycles (give or take a few week adjustments within those weeks due to illness).

After arriving at the hospital for my appointment at 10am I didn’t have to wait too long, about 3/4 of an hour before seeing the doctor and spent well over an hour with Dr Salim discussing the process and my options.

There was a lot to take in and I can’t remember all of the names of the drugs and processes that I will have to go through, but overall this is the process I’m going to go through with a rough run down of time scales and what to expect etc.

It is 99.9% that I will be using my eldest brother Nigel as the stem cell host. He is a 100% match. We were waiting for the results for my younger brother Nick to be faxed over, but they never arrived while I was there, but at the moment as Nigel is a perfect match we are going ahead with him as the donor.

I spoke with Edwina, who is the transplant coordinator and it looks like it will be September for my Transplant, but personally I think that will be the end of, so September / October time.

The process will involve the extraction of Nigel’s stem cells which will probably happen at the end of August. My process will be to have some chemo therapy followed by radiation therapy at Clatterbridge Hospital. That will be the first 3 to 4 days. Unlike the Auto STC this is not to totally destroy my own marrow etc but to reduce my system so that it doesn’t reject the foreign Stem Cells that are given me.

Once Nigels Stem Cells are given it is a process of monitoring the levels within my system compared to the new ones. interestingly if all goes well, both myself and Nigel will have the same DNA.

After a 3-4 week stay in hospital there will be a long time recovering at home.

All of the above sounds quite straight forward, but it obviously has it’s risks. The risk of death …. yes it has to be asked and the answer isn’t that good. With the autologous transplant last time, the risk of death was about 2%. With this process, there is not only the risk of dying during the process, if my body rejects the Cells and I get what is called Graft Versus Host disease which can occur not only during the initial stages of the transplant, but anything up to two years later then the risk of death is a massive 20-30%. In a study last year, 11% of those in the trial died.

So my options are to think about what will happen if I don’t have the transplant and compare that to what will may happen if I do. So after weighing in the balance the fact that my Myeloma has come back aggressively the option I have is to go onto Lenalidomide, statistics for this are 2.5 years before death. If this transplant is successful then I could be looking at 5 or even possibly 10 years, there are no stats to provide any evidence of this as it is still classed as clinical trials. Partly due to the fact that new things are coming out that can distort the results.

So given the information I have, the 30% risk factor of dying within the first 2 years to 100% dying if I don’t, the odds don’t look that bad. So 70% chance of it working, sounds better to me.

It will be a long time to recover and the risks still there for a few years and I will have to monitored closely, particularly if I get any kind of infection or illness.

My next appointment isn’t until Mid August and as mentioned target time is September. One of the other things discussed was making sure that the paraprotein  levels don’t start to creep back up while I’m waiting. I need to have further discussion with Dr Lee in Chester, but it looks likely that I will stay on the Velcade during the interim period to keep the levels as low as possible.

Audio Boo

I've Just been listening to a some Audio Boo's. … probably like me your thinking Eh! but basically it is a way of posting audio to the internet, up to five minutes long. It’s free to Join and you can use it from your smart phone. I’m going to have a go at posting some audio boos, so if you do join, look me up and follow me.

The site address is audioboo.fm and my user name is seantiernan so you should be able to find me.

If this works, below should be a couple of boo’s, the second follows on from the first.

Let me know what you think?

 

 

Last Velcade

After the results came back of my blood test, I was given the go ahead to have the last dose of Velcade. Mondays was postponed because of the Neuropathy pain I was having in my legs and feet, but as that has now reduced to a bear minimum it was felt that I could go ahead with this dose and to make it the last one I would need, rather than having another one next week.

I’m at Liverpool hospital tomorrow and should find out a few more details as to the process and time as to when I can expect the next Stem Cell Transplant (SCT) to commence.

I still don’t know if my younger brother is a match yet and should find that out tomorrow as well. The arrangements for the Stem Cells to be extracted will need to be organised as well, so I expect it to be a few weeks off yet.

As soon as I know anything I will let you all know.

Just when I thought I wasn’t going to be sick

Yesterday (Tuesday) when I got up, I felt a little better. The pain in my legs wasn’t as bad and I managed to get a relatively good nights sleep, only waking up a couple of times.

I even managed to go to the post office to post a letter (woohoo). After lunch though which consisted of a noodles, I felt really tired again and had to have my usual mid afternoon sleep to recharge my batteries.

I was awoke though about an hour later with a sudden urge to throw-up. I managed to make it to the toilet in time, even though my aching legs and feet slowed me down somewhat, then I immediately upchucked the lunch I had.

This cycle I hadn’t been feeling sick, so it was a bit of a surprise, although I think I fooled myself into not expecting it. As I didn’t have my Velcade on Tuesday I thought everything would be ok and I didn’t take any anti-sickness yesterday.

The lesson learned here is that the doxorubicin still has an effect even a week later and it isn’t necessarily the Velcade that causes the sickness.

I hope today will be better, I certainly feel a bit better today and the pain has decreased  even more, although not gone completely in my feet.

I’m actually sitting at my computer at the moment with my feet being massaged by a shiatsu foot massager. I’ve started to use it for about 20 mins a day and it certainly makes my feet feel a lot better. Now all I need is an all over body massage …. any offers!

Velcade Neuropathy

I was supposed to have my Velcade today, but the last few days have been very painful for me. Although I’ve had slight Neuropathy side effects in the past, yesterday was the worst. I spent almost all of yesterday in bed.

Every time I stood up it felt as though my legs were going to collapse and snap from under me. From my hips to the the tips of my toes were aching and I just couldn’t get comfortable to rest without being in pain. I tried rubbing my legs and feet, but that didn’t help. Walking to the the bathroom put me into tears and I had to build up enough courage each time to make the journey back to bed.

Charito helped me down the stairs at one point, as I was in so much pain in bed. She wanted to call the hospital, but I knew there was nothing they could do. After a while of sitting in the same position and taking lots of pain killers I managed to get some rest.

I took more pain killers before going to bed and although it had eased off this morning and I managed to get into the shower (getting out was more of a struggle and took me quite a while and a long rest).

I got to the hospital and had full blood counts taken, which came back with low Neutrophils, but the rest were ok(ish). After discussing the pain with the doctors though, it was decided that I shouldn’t have the Velcade today, but wait until Thursday, which is when I’m due my next one. They just want to make sure that it does reduce and it doesn’t cause any long term pain issues.

If I need to they will add another dose on the end – but that is still to be decided. 

Days after the day before

I hate the days after I have taken my Dexamethasone!. When I am on  the Dex I feel as though I have lots of energy, even though as mentioned I don’t.

Now I feel ….

very tired
sick
feet aching
can’t taste properly
constipated
moody
angry
upset
lethargic
snappy
lack of concentration
lack of appetite
no patience

… apart from that I’m doing OK.